In the seven or so years I’ve been blogging, I’ve only written a few posts that prompted controversy in the comments section. Looking back, I notice that these posts have involved chronic illness management, motivation, adherence and/or engagement. In fact, a commentator recently felt my writing was that of an old-fashioned doctor who believes that paternalistic messaging is key to engaging patients in an effort to improve their health. I’m paraphrasing but you can read the post and commentary here for more context. This spirit prompted me to reflect on my writing and intent. I believe sincerely that our work at Partners Connected Health is patient-centered in every way, so why the disconnect?

One possibility is that when I write about chronic illness, I am largely focusing on those conditions that are silent in nature (e.g., hypertension, diabetes, high cholesterol, obesity). We made a decision some years ago to build the case for connected health around the management of these illnesses because:

They are costly. By some estimates these chronic diseases account for 70% of U.S. health care costs.

They have a significant lifestyle component. This backdrop seems an ideal canvas for connected health interventions because they involve motivational psychology, self-tracking and engagement with health messages. These chronic illnesses pose a unique challenge in that the lifestyle choices that accelerate them are for the most part pleasurable (another piece of cheese cake? spending Sunday afternoon on the couch watching football, smoking more cigarettes and drinking more beer.) In contrast, the reward for healthy behavior is abstract and distant (a few more minutes of life sometime down the road or an avoided heart attack or stroke). This combination of lack of symptoms and the uphill battle around lifestyle improvement makes these illnesses uniquely challenging.

They are mostly amenable to tracking some objective bit of information about you (e.g. your blood pressure, blood glucose or activity level) in order to make you more aware and, hopefully improve your lifestyle in order to improve your health.

Because these conditions are silent and because most people would rather not be reminded that they have an illness, we found that a strong engagement platform is needed to get people’s attention. We also found that we need to create tools that nudge people to adopt and sustain a healthy lifestyle rather than ignore our natural tendencies to ignore these silent conditions and engage in unhealthy behaviors.

Over the years, this has led me to make some (apparently) controversial statements, such as: “We can’t just give people what they want.” This bold statement was made in the context of this conundrum of the tendency to ignore silent illness and engage in unhealthy lifestyle choices. I was also putting this in the context of mobile app development, where people seem to conflate the success of apps like WhatsApp and Snapchat with the potential success of mobile health apps. Once a commentator called me out on this. I see how it appears arrogant taken out of that context. The challenge remains however, that with our libertarian culture in the U.S. and minimal individual accountability for either health care costs or preventative health, we need some sort of tools to get folks to engage in healthier lifestyle choices. It’s a societal imperative if we’re going to tackle these chronic illnesses that account for 70% of health care costs.

If we don’t intervene, I think we all agree that the incidence of diabetes and other chronic, expensive illnesses will bankrupt our country in the coming years.

Interestingly, many of the commentators who have challenged me on this language have been folks with chronic illnesses but of a different type – the type that are debilitating because of symptoms.Whether it be chronic migraine, fibromyalgia, arthritis, inflammatory bowel disease or any other debilitating illness, they pose a very different set of challenges:

The associated symptoms make sufferers aware of their condition, all day every day. No tracking required at least as a tool to raise awareness.

Lifestyle alterations usually have minimal effect on improving these illnesses.

The individual’s motivation to get better is usually not in question.

With that context, it’s easy to conclude that these illnesses are quite different and that connected health tools to help address them require a different set of design principles.

I can also see where sufferers of this set of illnesses might have been offended at some of my comments in past blogs. For this misunderstanding, I apologize.

We’re on our way to thinking about how to support folks with debilitating, symptomatic chronic illness. Here’s hoping we can help. As much of a challenge it is to steer folks with silent ‘killers’ to improved lifestyle choices, it may be a bigger challenge to help those with chronic symptomatic debilitating illnesses to feel better.